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Netflix "Afflicted" - ME included
Joining forces with other groups would make sense. However when you join forces with groups that want to convince you that you have lyme, that you need antibiotics and a central line, that you should avoid all wireless technology, that you should give up all belongings and go live in the desert, that if you have tingling in the heels it’s Lyme, that you should change your diet to a high fat low carb diet, that you should see a naturopath, that x supplements cured them and that you should try it too, that you should buy a book to learn about a dubious treatment protocol, that you should detox your liver, then this is where i draw a line in the sand. Yes, we are all suffering. Yes, we are all deserving of sound diagnosis and treatments. However the way it is right now, for any groups seemingly, the treatment successes are very few (of course it depends how you define success but in this case I could define it as return to work and normal activities for 5 years) and the evidence is very low.
What we most desperately need is for science to do some untangling, for government to fund sound research, and for having patient registries and biobank. We desperately need a medical specialty comprised of mainstream medicine and the most brilliant scientists and experts that are keen to solving biomedical mysteries and who have a twist with science, drug development and clinical trials, when time comes. We also need a well motivated pharma with a desire to look out for treatments for found pathology.
What we most desperately need is for science to do some untangling, for government to fund sound research, and for having patient registries and biobank. We desperately need a medical specialty comprised of mainstream medicine and the most brilliant scientists and experts that are keen to solving biomedical mysteries and who have a twist with science, drug development and clinical trials, when time comes. We also need a well motivated pharma with a desire to look out for treatments for found pathology.
Yes, and we've seen efforts like this in the past, I believe.
I drew the line earlier than that, and I have been convinced by some pretty good clinicians that I have Lyme. But I think I appreciate where those patients might be coming from. Diagnostics aside, if you believe you are harboring spirochetes, that it is these spirochetes that are making your immune system attack you and debilitate you, then you will try to kill or quiet those bugs. Some people are willining to do a lot of abx. I'm one of those. Others believe that abx not only won't do the job for a lot of compromised people, but that abx can be dangerous. So they try other things after their turn at a limited amount of abx. Sometimes strange things. They do this because they are desperate and brave - and because they think they have a culprit in their sight and how do you NOT fight back when you know who the enemy is?
Are there charlatans out there who capitilize on this? I suppose there are. I suppose there are patients being duped. But for me this is not an indictment of the patient, but rather testimony for their will to get better. I am a treatment failure, and I have stuck to abx. As a treatment failure, I would not presume to second guess most of those Lyme sufferers who stick their necks out just doing what they can to stay in the game.
Agreed.
Yes.
Jonathan Edwards
Senior Member (Voting Rights)
I don't get this idea of 'aligning' or 'joining forces' or 'losing a huge proportion'. The success of any attempt to educate the medical profession and the general public about ME is unlikely to have anything to do with numbers of voices. It will have to do with clear argument. And clear arguments do not involve reference to speculative causes.
I think maybe you see ME and Lyme on a par in terms of diagnosis but as I was trying to point out, they are not at all comparable. There is no major problem with diagnostic testing for ME because all you need to do is make a careful clinical assessment and exclude certain other conditions and you have a firm diagnosis. If people labelled as having Lyme disease have all the features of ME of course they deserve all the respect and sympathy that others with ME do. But if they advocate for 'chronic Lyme disease' that is likely to do much more harm than good in terms of educating people about ME.
Esther12 has made the same points and I absolutely agree. I see all this from the perspective of a physician. I am totally persuaded that there is an illness called ME or CFS or SEID. I am totally unpersuaded about the speculative cause claims of other advocacy groups.
Dolphin
Senior Member (Voting Rights)
I do think we may be losing some of our community to other illness communities some of whom probably have ME. For example, I’m not convinced all those getting diagnosed with chronic Lyme have a condition that will readily respond to antibiotics. When people start seeing themselves as chronic Lyme patients they’re much less likely to donate or fundraise for ME research or volunteer for the ME cause in some way. This wouldn’t be so bad if they started donating or fundraising for Lyme research but there does not seem much focus on that in the chronic Lyme community, even though some spend large (eg five figure sums) on treatments.
I think this is incorrect. Symptomatically, for diagnostic purposes, ME/CFS and late stage Lyme frequently can parallel one another. There are differences (painful joints with swelling, for instance, in some Lyme patients, and of course, the rash thing), but all-in-all a list of symptoms would challenge most clinicians to differentiate. To state unequivocally that the two "are not at all comparable" may teeter on hyperbole.
Yeah, it usually is not this simple or clear cut or definitive. If I have ME symptoms but come in positive on the Lyme ELISA with only 4 IgG bands on the WB, can't I have ME? And if I can, who is to say that is not wrong, and that I actually DO have Lyme? I think you'd need to acquaint yourself with the 1994 Dearborn commission to answer that appropriately.
Forget about chronic Lyme. Focus on unresolved late stage Lyme, or, alternatively, what remains after it. If you do not believe that Lyme can withstand conventional dosages of recommended abx, then what remains in terms of the disease may be, for all intents and purposes, ME/CFS.
Fair enough. I see this from the perspective of a patient. I think that means we are on a par with intimate knowledge of these specific diseases - just different sets of knowledge. You have an edge with the calculus, so to speak, I perhaps with the politics and history. We both bring something to bear.
I am reminded of a Bishop who lectured that Christianity was the only religion. Regardless, isn't this somehow an appeal to authority fallacy, seeing as how you opine this right after pointing out you're a physician? Despite that, it's awfully hard to be expert in more than one orphaned disease - but that is indeed what many of us patients are forced to become. I would hate to be in a position to claim my disease has any more claim of intrinsic truth or believability than any other.
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The flip side of that might be that the Lyme community is losing patients to ME - and fibro and ALS and MS etc.
Likely both things are happening.
adambeyoncelowe
Senior Member (Voting Rights)
If it might be considered ME 'for all intents and purposes', then why is the Lyme diagnosis even helpful? Isn't it just ME with a different trigger?
I think it's interesting that there appear to be different CSF 'signatures' between ME, FM, GWI and Lyme, which suggests they're all different things, but I also realise this is far from proven. Those different CSF signatures may not amount to very much if they all share, say, one base hypometabolic state, which can be 'fixed' in the same way. They might just point to different triggers with the same outcome.
For the same reason @Hip 's enterovirus theory is important. If you can correctly name the thing, maybe it will some day be easier to tame it. Those CSF studies perhaps are simply pointing to different ME/CFS flavors.
Also, if a specific disease like Lyme or EBV or Herpes or whatever simply acts as a trigger, and then it is a corrupted immune system at play, that is essential to know, as well.
Right now, we just don't know. We postulate like crazy, but the science is not conclusive yet. Right now we are dealing with syndromes, or clusters of symptoms whose causes are still enshrouded - not unlike MS.
Mij
Senior Member (Voting Rights)
They have been convinced by alternative health providers that they will get well.
Dolphin
Senior Member (Voting Rights)
That’s likely a part of it. Also wonder whether there are enough people in the chronic Lyme community who warn people that many treatments are speculative. Though this issue arises with lots of illness communities incl. ME.
But also I’m not sure everyone wants to hear that illnesses like these can be chronic. There’s a person on a forum I’m on who says something along the lines that she believes all people with ME have treatable other conditions. There are lots of conditions in medicine that have no good treatments or only partial treatments but somehow everyone with ME type symptoms has a treatable condition. She constantly encourages people to try all sorts of treatments.
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Esther12
Senior Member (Voting Rights)
I'd be curious to see how that might work out for you.
It goes okay a lot of the time, although I have done it less in recent years.
I think most of those who have been told they have chronic lyme because of results from dodgy tests really do just want to get to the truth. Unfortunately a lot of people challenging these tests can fail to understand the sort of social pressures that can push people with poorly understood health problems to feel they need an 'explanation' to give people, or just end up talking as if the patients who trust what they've been told are stupid. In those ways I think that having fellow patients explain the problems with some of the quackery that has come to surround 'lyme' can be useful, as it can be easier to engage with the substance of the discussion when people are speaking as equals.
Some people do just seem to prefer pretending they know something to accepting how much uncertainty there is, but maybe the reaction to things like Afflicted will help people realise that if they are making unfounded claims about their health to others then, instead of relieving social pressures, it might just be inviting further scorn upon them when their backs are turned.
There are many well recognised chronic conditions that are dreadfully disabling and incurable with present treatments even after lots of money spent on research. For example, I lost a close friend last year with Motor Neurone Disease (ALS) and another is now, after 10 years with Parkinsons' Disease very sick and disabled, despite taking the prescribed treatments.
I think the thing that distinguishes ME and the other conditions featured in the Afflicted series is not that we all have disabling chronic, untreatable, physical disorders, but that our disorders are dismissed as psychosomatic, all in our heads, hysteria etc. by so much of the medical and wider communities. My friends with MND/ALS and PD suffer terribly, but at least they are believed and supported.
Many of us with ME and other disputed conditions are victims of medical neglect and even abuse, and of being pushed or persuaded into treatments that are either useless or harmful - some, like CBT and GET, promoted by 'orthodox' medicine, others by quacks. So we are double victims - of horrible illness, and of neglect, medical malpractice and quacks. We are deprived of good diagnostic services, medical and social care support, and research into our conditions.
So in that sense, it would seem a good idea to work together with other groups of a whole range of 'medically unexplained' conditions to campaign for better medical care and more research funds.
But the problem seems to me to be that even in the ME world we can't all work together and don't all have the same idea of the best advocacy strategies. Look at the disastrous directions AfME and AYME have taken in the UK in the past and even now.
Given that, I think, realistically, we can't expect the whole disparate community of people with unexplained symptoms and disputed diagnoses to unite into a single campaign group. It's just not going to happen in a way that satisfies everyone. It could all too easily turn into an unseemly squabble about which conditions are 'real' and which should be included in the campaign. You can see glimpses of this happening already on this thread.
If individuals want to join with others on particular actions, such as complaining to Netflix and the director of Afflicted, that's great, but I think we can't expect everyone to turn this into a rallying point for major united international action.
I think the thing that distinguishes ME and the other conditions featured in the Afflicted series is not that we all have disabling chronic, untreatable, physical disorders, but that our disorders are dismissed as psychosomatic, all in our heads, hysteria etc. by so much of the medical and wider communities. My friends with MND/ALS and PD suffer terribly, but at least they are believed and supported.
Many of us with ME and other disputed conditions are victims of medical neglect and even abuse, and of being pushed or persuaded into treatments that are either useless or harmful - some, like CBT and GET, promoted by 'orthodox' medicine, others by quacks. So we are double victims - of horrible illness, and of neglect, medical malpractice and quacks. We are deprived of good diagnostic services, medical and social care support, and research into our conditions.
So in that sense, it would seem a good idea to work together with other groups of a whole range of 'medically unexplained' conditions to campaign for better medical care and more research funds.
But the problem seems to me to be that even in the ME world we can't all work together and don't all have the same idea of the best advocacy strategies. Look at the disastrous directions AfME and AYME have taken in the UK in the past and even now.
Given that, I think, realistically, we can't expect the whole disparate community of people with unexplained symptoms and disputed diagnoses to unite into a single campaign group. It's just not going to happen in a way that satisfies everyone. It could all too easily turn into an unseemly squabble about which conditions are 'real' and which should be included in the campaign. You can see glimpses of this happening already on this thread.
If individuals want to join with others on particular actions, such as complaining to Netflix and the director of Afflicted, that's great, but I think we can't expect everyone to turn this into a rallying point for major united international action.
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Robert 1973
Senior Member (Voting Rights)
When somoneone in the UK says they were diagnosed with ME for a long time before they were eventually rediagnosed with Lyme disease, you can usually make a fairly accurate guess about where they were diagnosed. The people making these diagnoses and prescribing antibiotics are medical doctors. What I do not understand is, why are they allowed to continue to practice? Why have they not been struck off? Is the evidence against these tests not as strong I understand it to be? Is medical opinion divided? Or is there nothing in the UK to prevent registered medical doctors from charging large amounts of money for bogus tests and bogus treatments?
There are various bona fide tests and treatments which are not available on the NHS because they are deemed to be too expensive. How are patients supposed to differentiate between private physicians offering legitimate, evidence-based treatments and those peddling snake oil? I think many people assume that if someone is a registered medical doctor there must be some legitamacy to their practice.
Many years ago, when a friend with ME told me that they had been rediagnosed with Lyme and and that they were emabarking on an expressive treatment programme, it was only because the medics in my family advised me otherwise that I did not go to see the same doctor. I knew it was controversial but I felt that even if there was a 1% chance that it might work it would be worth trying. Given the lack of alternatives and ME patients’ legitimate lack of trust in advice/guidance from the NHS and NICE, it is understandable that many are willing to try bogus private treatments, even if their NHS doctors advise them not to.
Of course, this ties in with what @Dolphin said earlier. At an individual level it may seem to be a rational argument for trying any treatment as long as it has any chance of helping, however small, but at a population level, it would be far more rational (ie have a greater chance of leading to improvement) if everybody were to give the money (or at least some of it) to biomedical research. I really do believe that we need to try spread this message.
Or group of illnesses?
Finally, does anyone know the answer to this:
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Jonathan Edwards
Senior Member (Voting Rights)
There really aren't very many, @Robert 1973.
Thee are bona fide treatments that you will not get on the NHS until it is too late, like my cancer surgery, but at least they will tell you the treatment exists and is bona fide.
I don;t know quite why these people are allowed to practice fake medicine. My feeling is that regulation was more sensible twenty years ago. Increasingly we seem to live in a culture where nobody cares what is valid, as long as it makes money. But maybe regulation was lousy before World War II. There are reasons for thinking that the welfare state ethos that put validity before profit was something of an aberration of the post-war years.
Jonathan Edwards
Senior Member (Voting Rights)
An illness with a range of casual factors and variants in expression, yes, but an illness in much the same way as diabetes is an illness or hypertension is an illness, I think.
Jonathan Edwards
Senior Member (Voting Rights)
@Robert 1973
If a physician is providing diagnostic information about patients without their express consent, that is contrary to legal and ethical standards. I have not seen the film but it seems it could easily be construed that way.
On the other hand the defence would be that these were not the physician's patients. The physician had no contract of responsibility to them.
If a physician is providing diagnostic information about patients without their express consent, that is contrary to legal and ethical standards. I have not seen the film but it seems it could easily be construed that way.
On the other hand the defence would be that these were not the physician's patients. The physician had no contract of responsibility to them.
I find these observations a little ironic given the perception of ME/CFS in many quarters of the world. I wonder if you direct them to a gold standard of testing as an alternative to their alternative, and list the deficiencies associated with that.
Depends on the test. Validation is very difficult to achieve for many reasons, not the least of which is opposition to altering the status quo.
Broadly speaking, yes, medical opinion about Lyme and other TBD diagnostics and treatment are divided. I try to suggest to anyone interested that before embracing a side, they read up on the history. As with ME/CFS, not as many things as you might think necessarily are how they are being portrayed.
Esther12
Senior Member (Voting Rights)
I'm consistent about not recommending patients use testing that lacks any good evidence of value. I also try to be clear about the limited value of an ME/CFS diagnosis. There is no reliable objective test that we can be confident distinguishes those who have ME/CFS from those who do not, and I expect that within the ME/CFS diagnosis there will be groups of people suffering from different causes of ill-health. Also, while a diagnosis of ME/CFS can be of value when accurately applied, there certainly are prejudices associated with it which mean that some patients might be better off without any diagnosis for the time being, even though that can bring its own difficulties.
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